Collection, Use and Security of Personal Information

The Sjögren’s Syndrome Foundation (SSF) values and respects an individual's right to keep certain Personal Information private. Likewise, the SSF values the need to collect and use Personal Information which will enable the SSF to effectively deliver products and services leading to a reduction in suffering and death related to Sjögren’s. This Privacy Policy applies to activities of the SSF and additionally to persons visiting the SSF website, signing up for SSF publications and mailings, or entering into transactions with the SSF, and covers the collection, use, storage and disclosure of information and data as described in this Privacy Policy.

A.  SSF Collection of Personal Information

1. The SSF will collect Personal Information on an individual only if the individual provides the information to the SSF. The SSF also may collect information about a person who has been referred to the website to send them emails regarding SSF’s efforts or a person to whom the SSF has been asked to send emails regarding SSF’s programs or efforts. If a person donates to the SSF, the SSF may collect sensitive Personal Information such as the donor’s credit card number, card type, expiration date, and keep a record of the financial transaction.

The SSF may collect Demographic Information it obtains from individuals and third parties for fund raising purposes and to notify persons of SSF programs, events, educational opportunities and upcoming meetings.

The SSF may collect Aggregate and Transactional Information and add to its database every time a person visits an SSF Web Site. Also, the SSF collects Aggregate Information for research purposes.

2.  Types of information: "Personal Information" is "Demographic Information" which identifies a specific individual with a minimal degree of effort. Demographic Information includes name, address, city and other similar information. Transactional Information is data collected on an individual based on the individual’s interactions with the SSF, which may include sensitive information such as credit card information and Medical Information. Aggregate Information is information presented in summary or statistical form which does not contain data that would permit the identification of a specific individual without extraordinary effort.

B.  SSF Use of Personal Information

1.  When an individual provides Personal Information to the SSF, the SSF may use the Personal Information for its programs, research and fundraising.

2.  The SSF uses Transactional Information for research purposes for the development or implementation of its programs, products and services. The presumption is that, since Transactional Information is highly proprietary, it will not be disclosed to third parties.

3.  The SSF will disclose all information as required by law.

4.  The SSF will make every effort to discontinue the use of an individual's Personal Information as soon as practicable if requested by that individual. The SSF may need to retain Information in its archives and records to comply with law, resolve disputes, analyze problems, assist with any investigations, and take other actions otherwise permitted or required by law.

To request removal of your information from our database, contact the SSF’s office at 800-475-6473.

C.  Specific Requirements

 1. Administrative

 a. The SSF will take reasonable and appropriate measures to keep Personal Information confidential and in a secure environment, including taking appropriate action in the event of unauthorized disclosure.

 b. Access to Personal Information will be restricted to only those personnel of the SSF with a legitimate business purpose.

 c. The SSF owns all Personal Information provided to it by individuals and collected in accordance with this Policy.

 2. Third Party Disclosure

 Permission is required before the SSF discloses Personal Information to a third party. No permission is necessary for Aggregate Information, since Aggregate Information does not identify a specific individual.

 a.  For disclosure of Demographic Information (e.g., rentals or exchanges of donor lists), the SSF as a minimum will use the "Opt Out" approach. An "opt-out" is obtained when the SSF through some correspondence gives an individual the opportunity to decline or "opt-out" of disclosures to third parties. If the individual does not opt out, permission is deemed granted. Depending upon the nature of an activity or project, a higher standard than "opt-out" may be used, such as "opt-in" whereby an individual must affirmatively give consent before information is disclosed.

 b. For research awardees, permission is deemed granted upon submission of an application for a grant to the SSF. Therefore, the SSF may disclose Personal Information, including funding and project summary information, on research program awardees to third parties.

 c.  The SSF uses and allows third parties to use Aggregate Information for research purposes for the development or implementation of its programs, products and services.

 Last updated 01/01/2017